It was early June, our wedding was just days away, when the phone rang. It was the hospital informing me my mother was in the hospital, again. This had become so routine over the last few years that it usually didn’t alarm me. But this time they said it was different. They said they had discovered advanced lung cancer that was beyond treatment.
My future wife Jennifer and I rushed down to the hospital, and in a conference with the doctor he carefully and thoughtfully informed us that mom only had days to live, and he was recommending hospice care at home for her end of life care. He assured us that her comfort was to be the number one priority and she would be in little or no pain in her final days. They sent her home and mom passed peacefully on the third day. It was a special time, sharing precious memories and reconnecting with her as I hadn’t done since I was a little boy. I will always cherish those final days!
Here are some of the questions that I had when they first presented the hospice option to me, perhaps it will clear some things up for you if you are considering end of life care. To help us understand this sensitive and important subject, we turned to Habib Sherazee, CEO of Green Valley Hospice of Sacramento.
What is Hospice: At some point it becomes evident to the medical professionals that trying to treat the cause of a disease and prolonging life becomes futile. At that point, further treatment can cause unnecessary and uncomfortable treatment, leading to unnecessary suffering. That is the point at which the professionals will recommend the hospice option, often advising the end of life care be hospice care at home if the family is set up for it. However, hospice care can be provided in a facility as well. But the recommendation must always come from a physician.
What are the symptoms that suggest it’s time for Hospice? Changes in routine, disruptions in sleeping patterns, eating or drinking less or not at all, coolness of the hands, arms, or feet, incontinence, change in breathing, withdrawal, sleeping all day, saying goodbye: these are all pieces of a complex puzzle. The primary caregiver will be the first one to notice these changes. This is the time to get the patient to a physician for an assessment.
How should a family make the final decision to go with Hospice care at home for end of life care? The final decision always lies with the patient. This is never an objective data based decision alone: but one that is made from the heart. What does your heart say? Do the doctors say there is more that can be done? Or are they indicating that at best more treatment can only prolong what is imminent, and it’s time to focus on comfort care?
How Does this end of life care work? After a physician makes the recommendation for Hospice care at home, a hospice nurse will come to your home or facility, and do an in-depth assessment to make the final determination.
How much does Hospice cost? This is the good news: Hospice is free! Medicare and Medicaid will cover most of the cost. However, if you want to supplement the hospice care with a non-medical caregiver to provide respite care for the family, this cost is not covered and can run from $20 -$35 per hour, depending on the quality of care you require.
What services are provided by Hospice Care at Home? It begins with the Medical director, a physician that decides on the course of comfort care and the pain medications to be administered. Licensed nurses will visit once or twice a week, and any additional visits that are needed. They will be providing the skilled medical care that is necessary to keep your loved one comfortable. This includes monitoring and adjusting the pain medication as needed. They also provide chaplains, and social workers. These individuals focus on the family’s needs and provide counseling as needed and wanted. A few hours of non-medical care is also provided as part of hospice. These Home Health Aides will bathe the patient, in-bed if necessary, and attend to all their personal hygiene needs. Any additional hours to provide respite care for the family or primary caregiver can be obtained through a licensed Home Care Agency and must be paid for privately.